Wednesday, 11:50 PM
High-Level Journal Summary: Results from meeting with Dr. Howard Fine and his team at NIH. After reviewing my 10/15/07 Perfusion MRI, we got results I never quite anticipated in preparing for today.
I thought the big question of the day would be a philosophical battle about whether or not to continue for two more cycles of Temodar chemotherapy. However, that conversation did not need to happen at this point. Why? Because of unexpectedly good news.
My 10/15/07 MRI shows clear and impressive "shrinkage" compared to my MRI from exactly 11 months ago. In other words, there is evidence that my chemo treatment has NOT reached a plateau and is STILL effective. As such, continuing my Temodar chemotherapy treatment is still recommended. Wow. I never expected this outcome.
It has been an emotionally impacting day which has left me exhausted -- especially since my Brain Tumor Twin (Jill) was with me. She attended my MRI review and I attended her MRI review, and we both had difference outcomes. As new yet bonded friends, we have both been on an emotional roller coaster today.
Countdowns:
1.) Day 17 of 28 in my 26th 5/23 Temodar chemotherapy cycle.
2.) On 10/19/07, visit Dr. Raphael Davalos (Assistant Professor, Biomedical Engineering) and Dr. John Robertson (Professor, Biomedical Science). They are both at Virginia Tech. Talk about Irreversible Electroproration. This is used to treat brain tumors in animals and is apparently slated for clinical trial with human subjects. (I'll learn more soon.)
2007 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 4 days ago. At 7:30 PM, I saw persistent stars in the corners of my eyes for 30 seconds when I stood after sitting down for dinner for 30 minutes. I did not have an actual SPS, though.
2.) In 2007, I have had 69 SPS's in 290 days. This is an average of 1 SPS every 4.2 days.
Actual Journal: Dear Lord. What a day. I have pages of notes and many emotions, but much of it falls to the side (for the moment) simply based upon the bottom line.
Rewind to 8/24/07
But before I drive to this bottom line, I should rewind the tape a bit here. On 8/24/07, I met with Dr. Howard Fine and his team at the National Institutes of Health (NIH). The result of that meeting? In my own words, it was as follows:
This time, (my MRI indicates that) the early signs of reaching a chemo plateau are evident. However, this data is not completely assertive. The most conservative reading from today is that my MRI is "stable." There is justifiable data that also says my MRI is "slightly improved." Either way, this report is not nearly as encouraging as last time when the data was considered to be "pretty impressive."
I reacted emotionally to this report, actually getting upset that my effective chemotherapy treatment may actually have to end by the end of this year. As such, I got on the phone and canceled all out of town trips possible during the next two chemo cycles. The reason? So I would not have feelings of regret for not being better rested or better fit during it all.
In short, I am reacting with a real degree of anger about today's report. I am ripping off my gloves now, ready to start a street fight. I want to get everything I can possibly get out of Temodar chemotherapy, and if that means getting further into the trenches at this point, so be it. I'm there. That process just began this afternoon after I learned the latest news.
Since then
If I had to succinctly sum up everything that has happened since 8/24/07, I would highlight the following:
1.) I canceled all trips in September and early October. All my friends who I felt that I disappointed were nothing less than supportive of my decision. This allowed me even better focus upon my chemotherapy treatment.
2.) I got a medical opinion from my local oncologist, Dr. Dipti Patel, on 9/21/07. She firmly recommended at least 6 more months of Temodar chemotherapy. This seemed to be in conflict with my perception of the implications of the 8/24/07 meeting at NIH.
3.) I focused as sharply as possible on personal wellness. Exercise, diet, rest, new information. All taken to new levels.
Results I could not control
Per 10/16/07, I had my personal "Health Status Report" ready when I got to NIH at 9 AM today. As usual, I met with one of my CRNP's first. Today, I met with Irene Stroud -- who used to be named Irene Haggarty.
Irene answered as many questions as she could. We spent a good 45 minutes talking. Then, Dr. Fine arrived. He cut right to the chase and we went to look at my co-registered MRI's. I had no idea what to expect. I told that to myself when I walked through the doors at NIH this morning. I knew that whatever the results were, they were out of my control. I had to be at peace with that, to whatever degree possible.
Co-registered MRI's for T1-GAD Sequence
Dr. Fine had 4 co-registered MRI's up for review instead of just the usual 2 MRI's. He compared data from the following:
1.) The T1-GAD MRI Sequence from 10/15/07 was compared to the T1-GAD MRI sequence from 11/15/06. These two MRI's were 11 months apart, exactly.
2.) The T1-GAD MRI Sequence from 8/20/07 was compared to the T1-GAD MRI Sequence from 9/15/06. These two MRI's were also about 11 months apart.
Dr. Fine focused upon the 10/15/07 comparison to 11/15/06. As he clicked from image to image, I could easily see the difference. The images were NOT static. The images were NOT just stable. No. Instead, I could see more evidence of "shrinkage." That is, the density of brain tumor cells in the abnormal area of my brain was less...and visibly so. Dr. Fine said (and I quote):
• "Pretty impressive."
• "Pretty clear" (that the chemo continues to be working).
Comparing MRI's for FLAIR Sequences
Dr. Fine then compared data from the following:
1.) The FLAIR MRI Sequence from 10/15/07 was compared to the FLAIR MRI Sequence from 11/15/06. Once again, these two MRI's were 11 months apart, exactly.
Again, Dr. Fine could see the differences between the two MRI's...differences which indicate that the tumor continues to shrink compared to just 11 months ago. This is more evidence that the chemo is still doing its job. What did Dr. Fine say as he viewed these FLAIR Sequence images?
• Now, it is "skinnier."
Again, that is a direct quote. He could see evidence that the chemo is still effective...that my chemo has NOT yet reached a plateau.
Digesting this information
This is a hell of a lot of information to absorb when I was prepared for just the opposite. Mentally, I was not even imagining this sort of outcome. Honestly, I had not imagined looking at these MRI's and seeing the kind of shrinkage I had somehow "become accustomed to seeing" over the past two years.
Instead, I came into today expecting to duke it out about how long to stay on chemotherapy -- even in lieu of any data that said the effectiveness of my chemotherapy treatment had reached a plateau. That is what I was mentally prepared to do today.
But instead, we knew that we could postpone that difficult decision, at least for the moment. There was no reason to force this issue. Instead, Dr. Fine recommended that I say on chemo. He prescribed another two rounds of chemo, and he did so without blinking. It is the right thing to do. Why? Because that chemo is still beating up on that brain tumor and causing it to shrink (my words).
Swinging emotions
As those words come off my fingertips, onto my keyboard, and display upon my computer screen, it is an outcome that I never quite imagined. We bought at least a little more time here on chemo. We have at least two more cycles and then we can measure again to see where we are.
In the meantime, I need to make sure that hubris does not set in. I need to maintain the level of focus I have had in the past two months and keep going at my chemo with the same level of intensity. It has been perhaps the most keen focus I have had to date, and I am not going to question anything about whether it has been a hyper-focused effort. I am just going to keep hammering away, with incredible thanks.
There are many other notes and aspects to today that I need to express and better understand, but all those will come after I sleep an exhausted sleep. The emotions of today have been draining -- especially since my Brain Tumor Twin, Jill, came with me and had her MRI review, as well.
Shared with permission, it was recommended to Jill that she start taking Temodar chemotherapy as quickly as possible since there is some enhancement (i.e., growth) of her tumor since her brain surgery on 6/7/07. Jill came to my meeting and I came to hers, so to hear such different outcomes took us both on an emotional roller coaster ride. As Jill arrives back home in New York City at this hour, I bet she is as emotionally exhausted as I am. Both ways, it's a lot to handle.
Jill today, just before review of her 10/16/07 MRI.
